With Mary Flanagan, June Francis and Maria Mombille
Wednesday, July 17, 2002; 1 p.m. EST
Autism is one of today's fastest growing disorders, affecting 1 in 500 people. It is now known to be a neurological condition, but from the 1950s through the 1970s the medical establishment mistakenly believed it had found the root cause of the disorder: poor mothering. Doctors presumed that the often obsessive behaviors of autistic children -- rigid rituals, speech difficulty, self-isolation -- stemmed from their mothers' emotional frigidity. "Refrigerator Mothers" explores the traumatic legacy of blame, guilt and self-doubt suffered by a generation of women who were branded "refrigerator mothers."
Three of the experienced mothers who tell their stories in the film -- June Francis, Mary Flanagan and Maria Mombille -- were online Wednesday, July 17 at 1 p.m. EDT, to share the lessons they have learned over the years, and answer any questions you have about coping with autism today, parenting, the implications of medical mistakes and the making of "Refrigerator Mothers."
"Refrigerator Mothers" premieres July 16, 2002 at 10 p.m. EDT.
A transcript follows.
Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.
washingtonpost.com: Thank you so much for joining us today. How did you get involved in the making of this documentary film and why did each of you agree to share your stories with the public?
June Francis: I saw an article by JJ Henley in the Advocate Magazine -- which is the Autism Society -- and she was looking for people who went through this era and for such a long time I wanted to talk to people. So, I answered and that's how it got started.
Mary Flanagan: I had a call from JJ -- no, a letter. She got my name from Richard Pollack and asked me if I'd be willing to fill out a form. And then she responded back from that. SO, I was happy to be included. I had spoken to other mothers, but not in much detail. I read the Clara Parks book and she took her daughter to the same center we took our son to, where we were forced to see the therapist. Her follow up books are also incredibly insightful.
Chicago, Ill.: Thank you for agreeing to make this film, and for leading the way for Moms like me. I'm the mother of a three year old girl who is on the Autistic Spectrum. My battles are easier because of women like you.
Knowing what you do today, what is the one thing that you wish you had done differently when your children were very young?
Mary Flanagan: Oh boy. I did protest and resist, but it did me no good because I had no alternative. I wish I had found out about the League school in brooklyn at that time. We would of picked up and moved to Brooklyn.
June Francis: I just wish that I hadn't been so naive, but I was a product of the times. DOctors were gods. I didn't question enough. I wanted my child better, so I'd do anything. Parting with my child is the worse thing I did.
There weren't any alternatives.
Mary Flanagan: Or networks.
June Francis: We were isolated.
Bronx, N.Y.: Hi ladies. I didn't have a chance to see the show, but want to commend you all for your experiences with your kids. I, too, have an Autistic son and his pediatrician, when first approached about the possibility of Autism, said "he was too young" for such a diagnosis (he was 3). How are you dealing with the doctors now, that they know (or are supposed to) so much more?
June Francis: June: You're addressing the very young. I would hope doctors are wising up. My own doctor said she would watch the film and I want to give her a copy so they can learn. So its starting to get through to them that there's a tremendous.
Mary Flanagan: For the 10 years I did home information referral on the telephone (82 - 92), the ages of the children kept dropping -- all the way to two -- as the information came out about autism. Right now there's an organization on Long Island which has started to work and the first thing it did was to start calling meetings with pediatricians to reach out. So they know what to look for and that something can be done.
The critical thing is that you can intervene.
Great Neck, N.Y.: Were husbands relegated to the world of "refrigerator parents?"
June Francis: Not for very long. They saw him once a month, me once a week. If there was any hint the dad was involved it soon shifted to the mother.
Mary Flanagan: When Chris went to the Putnam Center, that psychiatrist chose to take bob as a client once a week and I was sent somewhere else. Probably because I was stubborn and resentful.
Reading, Pa.: I seem to remember that Dr. Bettelheim also blamed parents for having homosexual children. Is this true, it made me search our failures for years and thank goodness I have lived long enough to know now that first it it not a fault but the parents have nothing to do with it that at least they could have controlled.
June Francis: That's new to me.
Mary Flanagan: No, I didn't hear that. I know he railed against the diagnosis of learning disabilities saying children were fooling their parents. There have been a lot of books written saying he didn't know what he was talking about. I feel very sorry that you had that laid on you.
Chicago, Ill.: Back in the 50's and 60's, how did you finance all of this highly expensive care, training and materials?
Mary Flanagan: I had been lucky and my grandmother left me some ATT stock that was worth something then. And we had life insurance to borrow against. We were married 10 years before we could keep up with it.
June Francis: Private care was out of pocket, but residential was covered by insurance, so that's how we managed. Not that it did him any good.
Mary Flanagan: That's the cruel irony.
Eastlake, Ohio: You are wonderful caring mothers. It was offensive how mothers of autistic children were treated. I was wondering if you could explain the different degrees of autism. Was rain man an accurate representation of autism. Would rain man be considered severely moderate or mildly autistic? Thank you for listening.
Mary Flanagan: I would consider him high functioning and I think he was pretty realistic. The parts that weren't took place in the elevator of the casino. THe people who did the film were very careful. That's my impression.
June Francis: I agree. I think they did a pretty good job. I saw many characteristics in my own son. Rainman was more savant. It didn't show full spectrum.
It ranges from children who are non-verbal to self abusive. Asberger's syndrome too.
Mary Flanagan: It's more of a pyramid with the lower functioning below and the high functioning at the narrow tip.
Mary Flanagan: Now that we're doing early intervention I think the pyramid will change with more in the moderate and high functioning area.
Baltimore, Md.: My son was diagnosed this year with PDD and the news was a huge blow to our family. As I think back on his infancy I feel like I did not hold him or cuddle him enough. Primarily because I had post-partum depression which went untreated. I was so unhappy and distracted that his passive and quiet nature made it easy to ignore him and allow him to isolate himself. I have a baby daughter now and I shower her with hugs and kisses. Is it possible my depression and lack of affection those first few months of his life (approximately 6 months) affected his diagnosis?
Mary Flanagan: Well it's hard to say when you're not a doctor, but my answer will be no.
June Francis: That is a very hard one to call. You'd need a pretty detailed examination to figure this out. We couldn't say.
Mary Flanagan: But if someone said to me "You have made a child autistic." Think what you would have had to have done -- the extreme. They have children isolated in closets for two years who come out autistic. That's what it would take. Where the truth lies between the extremes I don't know.
June Francis: Don't blame yourself. Do what you can now.
Mary Flanagan: My autistic child was my first child, then when I got the second one who is a very communicative girl, I said to the psychiatrist I asked why my daughter was fine. He said "You needed her to be this way."
Lubbock, Tex.: I watched the documentary last night and I cannot begin to say what it meant to me. My daughter has Asperger's Syndrome (high functioning autism) and I went for l9 years not understanding what was different about her. I had to pull her out of public school in the first grade and I began to run from anyone who wanted to judge and label her. We were shunned by people and even her dad would say that she was my daughter. When she was l9, I decided to go to a psychologist and this woman ripped me apart. Said I had shuffled her from school to school and now she is grown and I had quite a problem on my hands. I left there in so much pain that I know exactly how you all felt all those years.
Fortunately, a few months later a very good friend of mine that is a psychologist stumbled over a conference about Asperger's Syndrome. That phone call she made that day to me telling me about AS changed my life forever. I knew my daughter had Asperger's Syndrome. I ended up divorcing and I was pulled to this West Texas town of Lubbock, Texas where everything has change. People here love my daughter, we are in two support groups and I am so no longer walking alone, she takes therapeutic horse riding lessons, works with handicapped children at the YWCA, she is getting ready to take a sign language course and some music therapy learning to play the guitar. Once I found out, she did not change but I did. I finally accepted her for who she is and that has made all the difference. Your show last night meant so much. I cried and cried and plan to watch it again and share it with other people. Thank you all for your strength to do such an unbelievable documentary!
June Francis: That's wonderful that they're getting to the point where they're helping Asperger's children to function. The acceptance is very important. Some things will not change.
Mary Flanagan: I think what you're seeing here with this late diagnosis, the 19 years of pain is so sad, but the good thing is that she survived. And this may cast some light why there are so many cases. It used to be thought of as a problem for the low functioning. Everyone in all spectrums need some level of help.
June Francis: If you have a high functioning child you're in greater danger of being blamed -- who may seem like there's something not quite right.
Somewhere, USA: As weird as it sounds, what do you think of the brushing of the arms with a brush for children (this was prescribed) for therapy?
Mary Flanagan: I think that's dealing with sensory problems and a lot of our kids are very touch sensitive which can overload their systems, so this is one way to touch and soothe a child. My son loves to have his shoulders and neck massaged, but he won't let me sit next to him to do it because he doesn't want my body to touch his.
Chicago, Ill.: How have you managed to get past all of the stupid advice that you were given, all of the terrible things that were said about you, and turned out to be terrific mothers and heroes to other women who follow behind you?
June Francis: Basically, I don't think I ever really believed it. I put it out of my mind and concentrated on what could be helpful. The emphasis should always be what can help instead of thinking about the past.
Mary Flanagan: I agree, but I was always fighting a rear focus battle. If I saw articles about Bettleheim, I would send of letters. When the University of Chicago wanted to name a psych dept. after him, I protested it. Boy am I grateful to Bernie Rimland and Mr. Pollack.
June Francis: When I read Rimland's book which came out in 1964, I think -- eight years ago -- it did help relieve any feelings of residual guilt.
Charlotte, N.C.: This is a wonderful thing you're doing, helping to educate the public and reliving your own pain. Thank you.
Re: Education. Are there online resources for diagnosing people who are now adults but may be mildly autistic? I know there's an autism scale in the MMPI, but I'm thinking of something publicly available and focussed on autism/Asperger's syndrome.
Mary Flanagan: There's got to be something you can find out by calling the Autism Society at 800-328-8476.
I know Yale has a program diagnosing and treating Aspergers.
June Francis: I think now its getting more interested in autism. There's someone in Bucks County, Pa. -- Dr. Ruth Coen.
Fond du Lac, Wis.: I enjoyed your very honest program last night regarding Autism. My main question for you is, How can I help my sister who has a child with Autism cope with her life as it is at this point?
Our little guy is having excellerated severe behavior issues which they feel was brought on by an intense music therapy program. He has numerous "trigger words" that when spoken will cause wild and violent outbursts. This caused a Sunday family gathering to become so hard for her that she decided to take her child and leave. When she left she was so angry, the child was out of control, and mom, she was beside herself. The entire family feared for her life as well as the child as they had an hour drive home. I fear my sister is near desperation stage. I see such intense sadness and isolation in my sister. Please tell me how to help.
I saw the same sadness and heart ache in one of the ladies last night. Discipline is an issue as she has always felt so sorry and guilty for his autism that she has compensated very much. Now we have a 8-year-old who in a short time will be able to cause some serious harm to mom or class mates. My sister needs help on discipline issues as well as help finding some happiness in her life. I hope to see this program rerun so I can tape it and send it to her. It would mean so much to her to know that another mom has thought the "hideous" help me or I will hurt him or myself! Thank you for your kindness and willingness to share with other families.
June Francis: I wonder if she belongs to a support group. She needs to talk to other mothers going through the same thing. I would assume he's under a doctor's care.
Mary Flanagan: If he's receiving good support at a behaviorally based program, there are ways to divert that child's attention to get him out of the panic and rage he's into. I'm not saying its easy.
June Francis: I fear putting him on meds when he's so young. That's the last thing you want to try.
Mary Flanagan: Not at that age, but my son at 45 has benefited greatly from medication. But for a little one, you need to reach and teach. Again, where's the autism society in that area, do they run support groups?
June Francis: I see the young parents getting such comfort from each other when I attend. I see women who come in distraught and see them two times later and they're bright and looking around.
Mary Flanagan: They need people who know what they're going through. You want to help, that's the first step. Ask her "What can I do? Can I babysit one night a week?"
June Francis: I couldn't get anyone to sit my child.
Mary Flanagan: We had two people. But by and large Bob and I never went out together.
June Francis: Your life is changed forever.
Mary Flanagan: When I was running a small organization, one thing I did was respite care.
Lancaster, Pa.: I want to thank you so much for the program that was on. Having a son with autism, it was strange to see the other moms and I just thought "so thats what I look like day in and day out" I am so very sorry for the moms that had to go on and on in the so called dark ages. I would like to know if they feel better having shared the story with us? I hope they do. I am so happy they did. I just want them to be happy also. I just want them to have some happiness. I love them. Thank you again. Do they think there is hope?
June Francis: Oh yes, this was so cathartic. I hadn't told my story to anybody, not one person. So I unburdened myself with JJ and David and I guess I got through them, because at one point JJ was hiding behind David crying. I feel physically lighter.
Mary Flanagan: Not so much true for me. As you can tell I talk a lot and I talk to a lot of people. I found a very good friend at one point who'd raised a small autistic child from birth and I was able to move on from there. What I like is helping other people. That's what makes me feel good now. It's a legacy that makes life meaningful. If you're suffering can help someone else..
San Francisco, Calif.: I was watching a mother on the "Today" show and she says her boy is now cured after removing milk from his diet. Is there any truth to the fact that an allergy to milk could be the cause of autism?
Mary Flanagan: I assume that mother knows what she's talking about and I don't know how it applies to others. I don't know anyone else for whom that works.
June Francis: A child should be tested for allergies before you do anything. These people are doctoring themselves, but they need a test to find out these things medically before they put them on a terrible diet. Paul wouldn't eat that. He needs his usual foods. It wouldn't work.
Mary Flanagan: Food is one of the most important things in Chris' life. IT's very important to him.
Chesterfield County, Va.: While mothers have generally been the ones "stuck" dealing with the child and very often without a husband (who bailed out) there are fathers who have worked very hard to get solutions, as well. Having Autistic twins was/is an experience. Congratulations on bringing these children/this problem to the fore. Eventually, doctors, educators and other professionals may learn what we know.
June Francis: Oh twins. Well, god bless you. You'll need all the help you can get. We need better programs for these children.
Mary Flanagan: The husbands that stuck around were generally the good ones. I have a wonderful husband and he was always there. But that didn't mean the autism didn't cause any problems between us, but our children needed both of us. We knew that.
Chicago, Ill.: June, When I watched your son watching the video, I felt a bond with you. It seems as if videos are a common thread that bind the families of Autistic children. Seeing his face light up (and yours) made me so appreciative for the small joys in my own life.
You mentioned that it's harder for mothers of high functioning children. Why do you say that?
June Francis: They're out more in the world and subject to criticism from other children, neighbors and more conflict in general.
Mary Flanagan: Ya, they get into more complicated social systems. They may learn to handle the straight-forward stuff, and if not handled right, could end up being arrested for speeding.
June Francis: In our township, they are trying to counsel policemen on how to recognize autism. And I think there is an instructive video for the police. So the Autism Society might have the name of it.
Milton, Fla.: Was there a single most thing that kept you going, other than the love of your "special child"? Thanks.
Mary Flanagan: For me it was the love of my other children. I felt I was failing CHris, but had to keep going for them. That's what kept me alive. It was my other children.
June Francis: I continued to have hope that Paul would improve. He didn't show his autism till he was three and regressed. And I thought if he had it once he can get back there. And I still work with him for that goal. So I never give up on him. And of course concerns for my other children.
Mary Flanagan: Chris was very difficult and acted out. He was a 24 hour a day person. I had gradually lost my expectations for him but never gave up on finding the best care for him. The interesting thing is that his new medication, Zyprexa, and his anxiety had wrapped him up in obsessive behaviors and this is dealt with now. He's just beginning to use a picture exchange system. He's 45. When he was really young he was on bad meds, then I heard Temple Grandin speak and she said she couldn't make it without her anti-anxiety meds.
New York, N.Y.: Was there just as much ignorance among every day people back then as there is now? I get so many people telling me "he looks perfectly normal" when I explain "why" he can't sit still or stand still or "why" he makes weird noises or "why" he's tantruming so bad.
Mary Flanagan: Ya.
June Francis: It's difficult to take someone 6-foot tall to a restaurant who may or may not be good. People still get up and move away. I understand and it does hurt. But generally things are better than they were 25 years ago. People are more sympathetic. I was in the grocery store once and this lady let me go first and out we went without any scene. So it's spotty. SOme can't cope with it.
Mary Flanagan: Some people are frightened of what's different. That's always going to be true. I have friends who would answer, "Have you seen Rainman." Chris looks very disabled. But people are learning to deal with it. Some people are not fearful by nature.
Lewisburg, W.Va.: Please share with the readers of this discussion those skills which were taught your children in school that you most value now.
washingtonpost.com: Maria is joining us now.
Maria Mombille: Sorry it was a misunderstanding of time.
Mary Flanagan: My child never went to school.
Maria Mombille: I'm not sure I understand the question.
June Francis: We're older mothers and they didn't have programs in place.
Maria Mombille: They didn't have programs for autistic kids, but for special education and they weren't geared to autistic kids. But some of that fell on Shem and the one I can think of was speech therapy and I think for an autistic kid that would be a must.
June Francis: Paul never had speech therapy.
Mary Flanagan: I have friends whose children have been taught typing, one taught how to shelve books in the library. Other people whose children can work a copy machine or printing press -- work skills, but living skills are important too -- how to wait in line.
Maria Mombille: I taught Shem cooking. Vacuuming
Mary Flanagan: Making your bed.
Chicago, Ill.: What are the biggest changes you have seen in the treatment and understanding (both public and professional) of autistic people and their families in the years since you first received a diagnosis?
Maria Mombille: That they're not labelling them as psychotic or emotionally disturbed.
Mary Flanagan: That they don't blame us anymore. That we're part of a teaching and care team. That you're a responsible adult.
June Francis: I agree. Our area has wonderful programs specifically for autistic children and it makes me envious and I wish paul had that.
Mary Flanagan: You wonder what your child would have been like if they'd had these programs at the age of two.
Maria Mombille: Help is coming for the young kids, but the adults are not getting the funding. We're still in the same truck, but we're still the headlights opening the road. It's a political game, checks from the state bounce and it's not a pretty picture.
That picture is still not pretty. It is better for the younger children.
June Francis: It's after 21 that the trouble really starts. We need to unite.
Maria Mombille: And the younger mothers can help.
Mary Flanagan: When I did referral work there was a crisis around 8 or 9 when expectations were not met, then around adolescence when that pretty creature becomes kind of a half-and-half and at those moments you need a look at the future.
Maria Mombille: I wonder that mothers who see the movie might walk out of there with unrealistic expectations that their kids will get fixed. Those cases were never labeled or diagnosed at autistic in our area. I have concern for those moms who could have a second heartbreak -- realizing that their kids won't get fixed. They have dignity for who they are.
Mary Flanagan: You have to be realistic loving and hopeful and it isn't always easy.
June Francis: You just don't know in the beginning how far that child would go.
Maria Mombille: I thought my child would be a Temple Grandin and he won't. But I just want to caution that there are heartbreaks.
Mary Flanagan: Even at 45, Chris is still making some gains and improvements. As you see him in the film, he's better than that now -- happier and more relaxed with the medication.
June Francis: Paul is doing excellently. Just took a trip to Baltimore Harbor. He goes places and does things I wouldn't attempt with him.
Maria Mombille: Shem is doing well, too. He's got a great sense of humor. Just value their dignity.
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